Thursday, February 10, 2011

Testimony by patients with severe & chronic headache

My Battle with Severe Headache

Have someone ever told you that you have only six months to live? I did, and it was not appealing news you have ever heard in your life.

It was back in late 2007 and I was only 41 then with a beautiful and passionate wife and four lovely kids, all under nine years old. It all started with a minor discomfort behind my left eye. All I thought at that point of time was merely due to my power of spectacles and I went to see an Optometrist for a new prescription.

Nothing has changed and the discomfort has started to turn into some sort of a pain like being stabbed by a blunt object behind the orbit. Occasionally, my vision would form into a whitish screen for a couple of seconds. My life has started to change ever since because I was reluctant to drive, refused to go out, and just preferred to stay at home. On the other side, my wife was very happy because I have stopped golfing, travelling and night-outs. To control the pain, I started to take Tramadol but it did not seem to be working. Then, I add-on Penedine, Frisium, Valium, Dormicum, Stilnox into the cocktail. Therefore, I went to an Ophthalmologist and did all sort of test including orbital CAT Scan and MRI. The best part was when she said I was fine and could not explain the cause of the pain. So, I insisted to be referred to a Neurologist.

During the earlier rounds with the Neurologist sometime in January 2008, the pain has developed into a full burning sensation in the brain as if my whole head was on flame all the time. I stayed in a fully air-conditioned room 24/7 to reduce the heat. I could not sleep and at that time, my medication dose has increased to a combination of 16 opiod-based painkillers for four times daily (these were my own combination through reading and from my GP friend). During severe attack, I had to resort for Pethedine injections three to four times a week from that GP friend. The dose even went up to 250mg at times to make me sleep.

As what was explained by the Neurologist, the symptoms are all related to brain tumor and suggested that I might have a small growth in my brain and prepared me for a brain MRI. I was however, concerned with the message from the Neurologist’s office that alarmed me, so I decided to have the test performed again. A friend of mine suggested that I should visit a research hospital and I went to see another Neurologist with years of experience. I was sent to the Pain Management Clinic and they conducted an MRI on me. The test came back with similar results that the MRI was blurred and I might have that thing called tumor in my brain.

I was prescribed with Gabapentin and Oxycontin on top of what I was taking at that time. The pain persists and on one fine morning, I woke-up and could not move my lower limbs. I had a total paralysis waist down and even collapsed unconsciously in the bathroom for more than half an hour. The experienced Neurologist suggested that on similar cases, chances of surviving were very slim and I was told to be prepared in six months. I did not know whether she was pulling my legs but I was dead serious about it.

During my immobility, I headed to another research hospital in the East Coast and had another shock of my life when I was told that I had four tumors; two in the brain and another two in my back. Even a graduate from a kindergarten could figure out that if one equals six months and therefore, four equals one and a half months. All my family members were emotionally down during that time as if I were going to die in ninety days. Could you just imagine the traumatic moments that I had during the breaking of the news? Since the pain was continuous, I was given morphine and valium every four hours to doze me off but I was still quite awake most of the time. After about two weeks, I was discharged on the note that it was a miracle that nothing of this growth thing was inside me. Surely, I was very happy but displeased with no concrete explanation was given by the Neurologist since I was still having the fire in my head and on crutches.

I came home, still emotionally down because no one could explain what was wrong with my head and my lower limbs. Sick and tired of the entire episode, I threw away all me medications and had to fight for the morphine withdrawal syndrome. It was tough and I even took ice shower at wee hours of the morning to cut-off the addiction. During that period, I had no eating appetite at all and could have become a junkie if not spiritually strong.

Still thinking that I was going to die, I went to Mecca three times in 2008 planning to die in the Holy Land, but of course the Almighty is mighty great, Alhamdulillah I still live on day to day basis until now. I could walk again but the pain in my head still persists at a pain score of minimum eight at all times. Being human and not satisfied with the whole thing despite still living, I went to another private hospital up North. They took my blood sample, did MRI, did CAT Scan, did lumbar puncture and all sort of nerves tests but the news was still great, I was fine. They asked me to cut all my painkillers and resort to only sleeping pills but neither that helped.

I came to a point of feeling misery, lonely and some even suggested me to seek for help from the people that we called Pawang, Bomoh, Dukun, Ustaz and the list went on. I was not particularly interested in all those sort of things and remained in my own silent and misery world. Nevertheless, as a true believer, the Almighty works in a miraculous and mysterious ways. After almost three years in deep pain, I met Dr Nizar coincidently and we talked about my pain casually. He was caring enough to explain about Cluster Headache, Facial Headache and Sphenopalatine Ganglion (SG) procedure. Something told me however, that I was getting most of the answers but still I continued searching for more in the internet.

I arranged to see him on a professional basis and insisted to carryout the procedure on the same day. I booked and confirmed my flight back and forth, with a very high level of confident that it will take me only two days to find out whether these were the cause of my pain.

The procedure involved having a needle shot into my cheek with only a local anesthetic applied to injected area. The pain was far greater than I had imagined but being someone who had surpassed pain score of ten, the effect was not long lasting. I was treated as a person from the first time I walked into the OT. I knew quickly that Dr Nizar was committed to giving me the best care and insuring I was well informed during the entire procedure. When RF was passed to the ganglion area, I could feel all sorts of sensations in my face, mouth, gums, and throat. The procedure was well orchestrated and was handled exactly as it was explained to me. I had only mild discomfort from the procedure and was already walking around in the afternoon.

There was no removal of body parts or major cutting and/or surgical complications or extended hospital stays that are commonly related to the other options listed for me earlier during my diagnosis.I was discharged from the hospital the next day and already started to feel the reduction in my pain score. Unbelievable, a week after the procedure, I was with my gang playing golf in Jakarta. Of course, I could not stand the heat so much but still I was able to play golf the entire day. Now, I am taking Tramadol only whenever necessary and Valium when I have difficulty to sleep. I believe that I am on the right track of recovery and hopefully the pain will continue to reside. My highest pain score after one month of the injection is three. Mentally and physically, I feel a lot stronger than the last three years and I am so thankful and blessed that I was able to find the best treatment option out there for me. Indeed, I was the chosen one to have the liberty of having such a painful experience in my life but as a person, it taught me to be a better person and appreciate life better after having to suffer emotionally for almost three years unknowing what is wrong with me.

I was surprised to know how Dr Nizar had been successfully performing SG in the East Coast, a procedure commonly available in the US and Europe but unfortunately not in this part of the world.

Finally yet importantly, thank you Sir Doctor for bringing a meaningful life back to my family.